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EDS, mild optic swelling and brain lesions
Posted: 16 August 2018 08:27 AM   [ Ignore ]  
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Hi all
I’m hoping someone might be able to help me!  After years of pain was told I had EDS type 3, I was relieved and started to manage myself!  Then I had a migraine type aura in my eye that didn’t go away, long story short, was told I had mild optic swelling, I still have the disturbance in my eye and was told it may never go.  Brain scan revealed ‘a number of subcortical WMH’ and I’ve now been seen by a neuro and an optho-neuro. Both say they don’t know why I had the optic swelling, but all test rule out MS.
I have had migraine with aura since I was a child and they have always been debilitating.  My questions are, can the migraine cause the lesions and can EDS cause the dizziness I experience? (have profuse sweating since I can remember, Dizziness that makes me have to sit down, gastro problems) Before this I had double vision a few years ago for 24 hours.

Thanks xx

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Posted: 23 August 2018 11:25 AM   [ Ignore ]   [ # 1 ]  
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Please read Dr. Diana’s book if possible. It explains so much. You might be experiencing autonomic dysfunction (some type of dysautonomia). The optic swelling could be caused by high intracranial pressure. Diamox is the suggested drug for this. Search this forum for this and you’ll get a lot of good information. Not a lot of activity is generated here nowadays, but Dr. Diana try’s to pop in and give suggestions. She opened the POTSCARE center in Texas and is helping people get their lives back. Check out that website too. Lots of good info. Also, you might want to join a couple of the facebook EDS pages. A couple of really good ones with loads of people very experienced in the trio of EDS, Dysautonomia & MCAS. Good luck to you. Hope you can start feeling better soon.

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Posted: 06 September 2018 09:52 AM   [ Ignore ]   [ # 2 ]  
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Thank you for your reply x

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Posted: 17 September 2018 12:15 AM   [ Ignore ]   [ # 3 ]  
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Not a great deal of action is produced here these days, yet Dr. Diana endeavor’s to fly in and give recommendations. She opened the POTSCARE focus in Texas and is helping individuals recover their lives. Look at that site as well. Heaps of good information. Likewise, you should need to join two or three the facebook EDS pages. A few great ones with heaps of individuals exceptionally experienced in the trio of EDS, Dysautonomia, and MCAS. Good fortunes to you.

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Posted: 08 February 2019 06:17 PM   [ Ignore ]   [ # 4 ]  
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Hello.  I am 48 years old and I too have just received results of WMH: “several small foci of high signal seen on the FLAIR sequence in the supra-tentorial white matter”.  The conclusion on the report Is:  “Minor nonspecific white matter signal changes in the supratentorial brain.  These most likely represent evidence of early micro-angiopathic disease.  Differential diagnosis is broad and would include post inflammatory and idiopathic causes of demyelination as well as small vessel vasculitis.  Follow-up may be helpful to assess temporal change”.
I too am having increased dizziness and gastro problems [in addition to cognitive and memory decline].  I have the report, but I haven’t actually met with my neurologist to discuss it [she ordered the MRA].  If it is Early Micro-Angiopathic Disease, I would be inclined to think that I may have Vascular EDS, as I am only 48 years old, so it is early-onset.  I do have many other signs of Vascular EDS, but I am diagnosed with Classical EDS.  Mine is considered mild, or early stages of white matter disease [another name for micro-angiopathic disease].  This does make sense, as I have been telling every specialist I have seen over the decades that not enough blood is getting to my head and I could actually prove it.  Anyway, not sure if this helps or not, but it is interesting that you also have WMH.  Also, I have a deviated septum and enlarged turbinates that at times completely block the left airway and partially block the right airway, leaving me not being able to breathe through my nose.  This causes systemic-wide inflammation and a cascade of events whenever I am in a flare-up - but the doctors are not taking me seriously when I tell them my airway is blocked and I am not getting enough oxygen.  Maybe now with Early Micro-angiopathic Disease, they will finally believe me.

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Posted: 13 June 2019 02:27 AM   [ Ignore ]   [ # 5 ]  
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juliajohn - 17 September 2018 12:15 AM

Not a great deal of action is produced here these days, yet Dr. Diana endeavor’s to fly in and give recommendations. She opened the POTSCARE focus in Texas and is helping individuals recover their lives. Look at that site as well. Heaps of good information. Likewise, you should need to join two or three the facebook EDS pages. A few great ones with heaps of individuals exceptionally experienced in the trio of EDS, Dysautonomia, and MCAS. Good fortunes to you.

I am agreed as she helps one of my friend who suffers badly. her recommendation truly works and she help her a lot.

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Posted: 09 August 2019 02:31 AM   [ Ignore ]   [ # 6 ]  
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MJ - 08 February 2019 06:17 PM

Hello.  I am 48 years old and I too have just received results of WMH: “several small foci of high signal seen on the FLAIR sequence in the supra-tentorial white matter”.  The conclusion on the report Is:  “Minor nonspecific white matter signal changes in the supratentorial brain.  These most likely represent evidence of early micro-angiopathic disease.  Differential diagnosis is broad and would include post inflammatory and idiopathic causes of demyelination as well as small vessel vasculitis.  Follow-up may be helpful to assess temporal change”.
I too am having increased dizziness and gastro problems [in addition to cognitive and memory decline].  I have the report, but I haven’t actually met with my neurologist to discuss it [she ordered the MRA].  If it is Early Micro-Angiopathic Disease, I would be inclined to think that I may have Vascular EDS, as I am only 48 years old, so it is early-onset.  I do have many other signs of Vascular EDS, but I am diagnosed with Classical EDS.  Mine is considered mild, or early stages of white matter disease [another name for micro-angiopathic disease].  This does make sense, as I have been telling every specialist I have seen over the decades that not enough blood is getting to my head and I could actually prove it.  Anyway, not sure if this helps or not, but it is interesting that you also have WMH.  Also, I have a deviated septum and enlarged turbinates that at times completely block the left airway and partially block the right airway, leaving me not being able to breathe through my nose.  This causes systemic-wide inflammation and a cascade of events whenever I am in a flare-up - but the doctors are not taking me seriously when I tell them my airway is blocked and I am not getting enough oxygen.  Maybe now with Early Micro-angiopathic Disease, they will finally believe me.

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